Well, I’m on the home stretch now; the finishing line very much in sight.
Nothing is quite as expected, though. From early on I had made my wish to die at home be known but here I am in a bed in the Alexandra Unit, which provides palliative care and is the nearest thing we have in Dumfries & Galloway region to hospice provision.
Anyway, the change of plans was my choice. At home, although they would take every possible care to have the drugs I would need when the pain became more severe, I wasn’t going to have someone 24/7 with the key to the locked cabinet. I didn’t want to behave all undignified if I couldn’t get my drugs!
I was mentally preparing some funny stories to share with you (like the woman who wanted a cleaning job but not when she was a bit busy near Christmas) but it’s late and I need to take my ‘breakthrough’ morphine dose (learning the lingo!) which I’ve delayed to get this wee post out there. I’ll try to remember them – not that I’ll be seeing my house again, dirty or otherwise.
My son is home. He came down after my weekend flight and decorated the Christmas tree and made such a lovely job I realised I should have had him doing it every year! I think I issued a challenge to him and his partner to a game of Rummy. And my sister’s dog is wondering why she’s never been invited on hospital visits before now. Patients have treats hidden all over the place!
Wishing each and every one of you a happy festival time and many thanks for all your support and love.
After my last post recording my decision not to go for further cancer treatment I really did intend to post an update a bit sooner than this. I should have remembered the unpredictability of cancer and not made assumptions things would tick over just the same.
The couple of weeks before my last post were busy seeing friends, doctors and the dentist (another emergency – broken filling)! I had an online consultation with the palliative consultant and she changed some of my medication. I’d been on a combination of codeine and paracetamol to try to suppress the constant cough and it was making me feel nauseous most of the time which rather put me off eating.
The consultant prescribed morphine instead, both a tablet and a liquid form. The tablet creates a slow release background dose to provide pain relief, help the breathlessness and suppress the cough and I could take the liquid stuff when required. The pain is something fairly new; a difficult to describe sharp pain along my right shoulder.
Then, the weekend after friends we met in Pakistan thirty years ago came to visit. Usually, they would stay with us and we would never go to bed the same day we got up. This time they booked into a hotel which, although not how I wanted it to be, was incredibly thoughtful. I could come home in the afternoon to have a nap before meeting again in the evening – but my goodness did it not make me feel horribly old to be the person who needed to nap!
Other friends had, unbeknownst to me, had been plotting to arrange a flight for me in a two-seater Piper Pup plane – something I didn’t know was on my bucket list.
Wow! Despite the less than elegant scramble getting in and out of the aircraft, it was absolutely amazing. The sun shone, the flight was stunning and, at the risk of upsetting my friend Beetley Pete, I think it really was awesome. I am so, so glad I went and it happened when it did. I seriously doubt if I’d manage to get in the plane now.
Things went downhill after the weekend. I thought at first it was a result of doing too much and a few days of rest would put me right again. Deciding to have a bit of quiet time, I cancelled engagements, apart from my appointment with the palliative consultant – this time, a face to face consultation. We also cancelled our planned trip to Aberdeen to visit our son at the weekend. That was a good call as it was the weekend of Storm Arwen so travelling would have been a mistake.
Concerned about how breathless I’d become in case there were blood clots in my lungs the consultant organised a CT scan for the next day (the next day!) and upped my morphine.
No blood clots to be seen, which was a relief but nothing else pointed to a cause of the breathlessness. In case it was a return of the pneumonitis, I was put on steroids. Remembering how fast they took effect before I was looking forward to feeling much better after the first couple of doses over the weekend. Unfortunately, I wasn’t.
The GP called me on Monday evening after seeing the scan results and suggested an antibiotic as there was a suggestion there could be an infection. I’m over half way through the course now without any improvement.
I had my first home visit from a Macmillan nurse this week. She further increased the morphine medication, assuring me I am still on a very low dose. We discussed the difficult topics of putting in place DNR (do not resuscitate), which actually isn’t so difficult when you understand your heart stopped because we’re all done here and breaking ribs to re-start it – possibly very briefly – isn’t a great idea.
I have an appointment with the consultant at the beginning of the coming week. I have to say I am very impressed and very glad of the support network which has, seemingly seamlessly, appeared in place.
I’m tired in a way I’ve never been tired before. Chemotherapy made me tired, radiotherapy wearied me deep in my bones but this – this is something else again. In the morning I make and eat my breakfast then go back to bed with a cup of tea. It’s stone cold when I wake up. Talking makes me cough. A short chat on the phone leaves me breathless, coughing and exhausted. I’m a talker – this is hard. I’m hoping further tweaking of the meds will help to relieve some of these symptoms, at least for a while.
I would like to do some writing – there’s still the Goldfish blog to convert into a book and there are poems to be written and edited – but it will depend on my energy levels and focus. I apologise for not reading and commenting on as many of your blog posts as usual. That takes stamina. I will try to respond to as many comments on my blog as possible – it’s always been a cardinal blogging rule for me to engage – but if I don’t please don’t be offended. I’m just a wee bit knackered right now.
The last couple of weeks haven’t been easy, not least getting my head round the fact the increasing amount of medication I’m taking is not going to make me better, but there have been some wonderful highlights which I’ll enjoy remembering.
I’m still dithering over what to decide about the chemotherapy treatment option.
I have had a meeting with the palliative care consultant which was helpful and reassuring in that chemotherapy and palliative care are not an either or scenario and if I decide to go ahead with the chemo, I can still be seen in palliative care for help managing any symptoms from either the disease or from the treatment. Knowing support is available in managing symptoms caused by the treatment is reassuring.
Other topics discussed with the consultant included resuscitation and whether or not I should have a DNR in place and also whether or not I would want to treatment interventions such as ventilation (I think that’s a no).
I started on the SafeFit trial established by University Hospital Southampton NHS Foundation Trust, Macmillan Cancer Support and other medical bodies to enable people with a cancer diagnosis retain or regain physical fitness levels. After a very lengthy process or questionnaires both online and over the telephone – plus a bit of a hiatus in my application because of the unexpected appearance of cancer cells in my lymph nodes after my treatment ended – I was accepted and assigned an instructor. For the first four weeks I have one-to-one online exercise sessions, tailored to my fitness levels and needs. It’s very much a holistic approach so my instructor always checks on my stress levels – not sure she expected me to burst into tears on our first meeting but she coped very well.
I also re-started Pilates classes after a break and that felt good, too. Over the period of lockdown, which more or less coincided with my cancer diagnosis and treatment, the class has been so important – the exercise but also seeing people, even if only on screen.
All in all, I’ve been feeling fairly well – and although I can see the lymph nodes in my neck expanding they aren’t bothering me too much yet – though I do worry about winter when I usually wear polo neck jumpers, which I suspect will be an irritation. But then, as always seems to be the case, whenever I’m doing the things I’m supposed to be doing to improve my health, to stay as physically strong as possible, something knocks me back. This time, I put my back out. I was putting the cat’s breakfast down on the floor – forgot to engage my core and bend my knees. Mea culpa.
I reached for the frozen peas followed by the heat pad. Dug out the lumbar brace and took paracetamol, expecting it to ease off after a few days. It didn’t and I had to give in and make an appointment with my GP. Before cancer, I was rarely at the doctor. I was brought up by parents who believed the NHS was a wonderful privilege never to be abused – so you had to be seriously ill before the doctor was consulted – and so I still hate to feel I’m making a fuss about nothing.
Oh, my goodness, what a difference strong painkillers and a muscle relaxant made! When I woke up three days later (I’m kidding) I couldn’t believe how much the pain had receded. Before the pills, I couldn’t have sat for long enough to type this far. I should apologise here to the many people waiting for a reply to their emails, letters and cards – now you know why I’ve not been able to keep up.
The one thing which did help my back when it was bad was walking, which really eased it. I was delighted to be invited by a friend to take one of her llamas for a walk. It was a lovely.
Annie the llama did grumble a bit at first about being made to go for a walk but she soon stopped complaining and seemed to enjoy looking about her. Occasionally, she turned to stare at me as if to say: “I don’t know who the hell you are but I think we can manage this together.”
I’m so looking forward to my trip to Islay with Wee-sis, which is still a couple of weeks away. Isn’t it odd how time moves slowly at times? Before Islay, though, I have another exciting event – a wedding. I can’t remember when I was last at a wedding. I can’t remember when I last wore heels!
The week I come back from Islay (16-24), I’ll meet the oncologist, try to get answers to my questions and make my decision.
It’s been almost a month since my last blog post – and what a month of highs and lows and bits in between it has been. Get the drinks and snack ready for a long post!
Soon after the meeting with my oncologist, while waiting for the requested PET scan, I was on the beautiful island of Arran where I’d been invited on a writers’ retreat. I’ve visited Arran, with the DH, several times and on most visits we’d climbed Goatfell so I was concerned I’d be depressed knowing I can no longer do such climbs, nor many of the other walks I’ve previously enjoyed. Rather than be depressed, the combination of being in such a magical place with glorious sunshine, talking writing with three wonderful women, I felt exhilarated and by the end of the week had convinced myself I could climb Goatfell. I’d have to start early as it would take me all day with the number of rests I’d have to take but I was sure I could do it. I was also sure I was getting my writing mojo back.
We were there to write but we did have a day out around the island and visited the standing stones on Machrie Moor. I’ve put photos of them on a past blog post. Sue Vincent and I hoped we would make it there together, possibly after she came to visit Cairn Holy last April. Sadly, that was not to be. It was a warm sunny day (first time I’ve seen the Stones in sunshine) and we saw two buzzards and a red kite so we knew for sure Sue was around.
My lovely GP had posted the oncologist’s report from the meeting to me. Unlike seemingly everyone on the oncology team my GP believes the patient should have access to reports and letters. And is happy to explain things I don’t understand. The report made clear if the cancer is confined to the lymph nodes in my neck the oncologist is suggesting an aggressive radical course of therapy – ensuring “the overlap (from previous treatment) was minimal and the doses to the normal structures such as the spinal cord and the brachial plexus are within acceptable limits.” I think that makes it clear why a) it’s important for the patient to be able to read the report and b) have things explained before the next meeting.
If the cancer has spread radiotherapy isn’t an option and neither are targeted treatments, nor immunotherapy, which can cause pneumonitis. Remember the trouble I had with that! Chemotherapy “potentially with Docetaxel and Nintedanib,” the side-effucks of which sound even more horrendous than my previous chemo drugs.
My PET scan was booked for the Monday after my return but an appointment letter was waiting for me saying I’d to be there on Tuesday, not Monday. I phoned to check and was told the date had been changed because it was a Bank Holiday in England and the fluorodeoxyglucose (FDG) they inject into the vein wouldn’t arrive on time. The DH had to change the hotel booking we’d made for the Sunday night to the Monday. Luckily, the hotel wasn’t fully booked. We checked in, booked a table in the restaurant and had a pleasant evening. In the morning I’d just come out of the shower when they phoned to say the scan had been cancelled. We drove straight home – at least I was able to have coffee and breakfast – not in the mood to linger in Edinburgh.
The next two scans were booked and postponed. Finally, it happened on September 06. We didn’t go up the night before so it wasn’t the pleasantest of mornings on what is a pretty horrible drive anyway and worse when not being able to have a coffee. I could drink water though wasn’t able to have any cough syrup or pastilles, though.
I only found out by chance about not taking cough medicine. Every pre-scan discussion which stresses the need to fast also says it’s all right to take medication as usual. I don’t know what prompted me to say I use codeine linctus but when I did I was startled by the vehemence of the response. “Oh, no, you mustn’t. Because of the sugars it contains it can cause false positives in the scan.” Well, wasn’t it good I asked! If it had been discovered I’d been swigging cough syrup the scan would have been cancelled.
Top Tip for anyone having a PET scan – when they say you can take medication as usual during the pre-scan fasting period – do check if it really is OK to take the medicine you have.
Of the various ups and downs over the month the biggest down of all with Taliban back in power in Afghanistan. A few, a very few, of my friends have got out. Most have not. Having people I love and care about begging for help I can’t provide is heart breaking and soul destroying for us all.
And, so to the last down in this post – the PET scan result. My appointment was today, though not with my oncologist who has Covid, but with one of her colleagues and it was a video conference. Not an ideal situation.
Unfortunately, it shows the cancer has not been contained in the lymph nodes in my neck but has affected lymph nodes in several places. This means radiotherapy is not an option. I was dreading making a decision about whether or not to have radiotherapy, especially when described as aggressive, knowing how much it f****d up my lungs last time. And this time it would have been risky because of the proximity to the spinal cord and the brachial plexus. Anyway, I don’t have to decide on that as it’s not going to happen.
The only possibility is a course of chemotherapy – a much more brutal combination of drugs than last time, and which might give me a few extra months to ‘live’. I include the inverted commas because spending several months feeling ill, fatigued and unable to do much does not sound like living to me – existing maybe but not living. The difference between having treatment and not having treatment in terms of ‘overall survival’ is about two and a half months. It appears the main benefits of the chemo may be that it would relieve symptoms. I don’t yet have any and don’t know what they might be. I will ask. I will have other questions, too.
I have requested to speak to a palliative treatment consultant before making any decision. Guided by my wonderful mentor at Maggie’s Centre in Edinburgh, I actually asked about this a week ago but the message was missed because my specialist nurse has been working from home and until this week had been unable to pick up messages on his work phone. I didn’t like the implication at the last meeting I had with the oncologist that if I decided to go for palliative treatment I’d be discharged by her and referred to a palliative doctor.
Anyway, that’s where I’m at – the cancer is back, is not going to go away. I have decisions to make – should I plant more spring bulbs? – but for now I’m mostly looking forward to a holiday with Wee-sis on Islay next month.
Friday 16 April: This is going to be a brief update (do I hear sighs of relief all round????) and I’m aware I’m a couple of days late if this is a weekly update.
My breathlessness and coughing continued to lessen and I felt better, both physically and emotionally (as long as I didn’t/don’t think about the next scan and its result). On Wednesday, the Lung Specialist Nurse, and as I don’t name names on this blog I really ought to pin down what his title is, called to see how I was doing.
I was doing fine. I hardly coughed during our conversation. When I asked about my last blood tests he said the CRP (C – reactive protein), that marker of infection or inflammation was within the normal range. Wow! After only a week the steroids had got on top of the pneumonitis. Chuffed!
He said I sounded well and positive and elated and before I started to backtrack and say things like ‘well, today things seem fine but…’ or ‘we don’t know if this is really an upturn’ or … I remembered a comment from Kim Ayres on my last update: “Not allowing our optimism now, will in no way prepare us, or cushion the blow if negative news comes along. It’s too big. So if it happens, we wasted those chances to feel good.” I decided I wanted to agree with the Specialist Nurse – I was feeling decidedly better than when we last met and he could tell the oncologist so and that I was not sounding as grumpy and bad-tempered as usual.
Wednesday was also when I was doing my talk in the evening for Aberdeen City Library on routes to publication and selling your book once it’s out there. I think the title of the talk was a bit snappier than that. I did my prep. I think the talk went well. The organiser has been in touch and said the feedback has been excellent, which is very pleasing. It makes me feel I can get back to this kind of work – helping and encouraging other writers. Despite a cancer diagnosis it is possible to carry on with ‘normal’ creative practices.
What did annoy me, however, was the number of ‘no shows’. The talk was fully booked with a waiting list. On the day of the talk, a few people contacted the organiser to cancel and she was able to give places to people on the waiting list. Three people were still on the waiting list a few minutes before we went live but did not get the chance to join despite several people not showing up for the talk. Perhaps some, to give them the benefit of the doubt, had technical problems but not all. I have to say I feel signing up for events online and not turning up without sending timely apologies is disrespectful to the organisers of the event who put in huge amounts of time and energy, to the guest speaker and to other potential audience members who could not attend because the event was fully booked and over-subscribed.
Please, please, don’t regard online events as something to sign up to even though you know you might not (probably won’t) attend. Signing up should be a commitment in the same way as buying a ticket for a literature festival event or a concert.
From the organiser of several library events: “The British Library has found it beneficial to charge for their events. Consider people obviously attach more value to something they have paid for – even if just a very small amount. It is something we are considering.”
I did enjoy doing the talk though at the end of the official part of it I felt we should be sitting together having a really good blether, preferably with a glass of wine in hand (looking at you John Nelson) about writing, publishing, the ridiculous behaviour of publishers instead of saying a stilted goodbye.
What has any of this to do with lung cancer and not knowing what the next scan will show? Absolutely nothing and absolutely everything.
Random photos will have appeared throughout this blog. I haven’t been to see any new lambs but have managed a couple of visits to the garden (mainly thinking about how small my garden is until I’ve lost a precious earring and then it seems to be enormous), the osprey walk.
Oh, and I’ve had my second Covid vaccination and should be fully protected by the time I do the next update. And if all of this (brief? Yeah right,) update seems a bit disjointed and a bit rambling it’s because I’ve drunk a lot of red wine (apologies to non-drinkers) – and I’m still alive.
Saturday, 27 March: After such a gap, this will be a long post so grab a coffee or a glass of wine and some cake. At the end of my last diary entry on March 10 I still, despite antibiotics, had a hacking cough. On Monday 15 I had more bloods taken at the health centre. The practice nurse thought I felt a bit warm, took my temperature and spoke to the GP who was able to see me after the last patient. Stronger antibiotics and a codeine-based cough syrup prescribed.
Just after 6pm the GP called to say my CRP (C-reactive protein, which can be an infection marker, or indicate inflammation such as in pneumonitis, caused by radiation) was, at 128, much higher than before and wanted me to go straight to the CAU (combined assessment unit) at the hospital. Someone there knew I was coming in. Hah! That person must have gone off duty by the time I turned up, rang the buzzer and waited in the cold for ten minutes before someone came to fetch me.
Admitted at 7pm, nursing staff did the basic observations. Fortunately, I’d had experience of being in the unit before when I had the pulmonary embolism so I knew patients’ drinking water must come from a deep well guarded by multi-headed monsters and had brought some with me. I wasn’t offered any. Everyone on the unit is “very busy”. At midnight, a doctor came to examine me. She prescribed intravenous antibiotics, booked me for an x ray – and said I could have a couple of paracetamol to bring my temperature down.
A cannula was fitted for the IV antibiotic, a Covid test was carried out – then nothing happened for a while until just before 2am two people arrived to take me for the x ray – but the nurse wanted to put in the IV antibiotic first and made them wait. I was still waiting for the paracetamol – they had to check the doctor had written up that I could have it. Finally, roughly two hours after seeing the doctor I got paracetamol to bring down my temperature – and, I hoped, so something about the banging headache I had.
TOP TIPS for being admitted to a “very busy” NHS assessment unit – bring in plenty of drinking water; have a packet of paracetamol hidden in your handbag or trouser pocket; and a wee packet of oatcakes to provide sustenance. Unfortunately, I’d only managed to bring water.
The drip was put up. When it gave the two minute warning bleep that it was about to finish, I pressed the buzzer. After a while, I got up, opened the door and stood in full view of every member of staff until someone finally came to see what I wanted. I was told the drip would finish in a couple of minutes. I asked if she would hear it bleeping or should I press the buzzer? She said she’d hear it. If she did, she was ignoring it – and my buzzer. Again, I opened the door and waited until asked what I wanted. I explained the drip was finished (of which she was well aware) and I was desperate to go to the loo – was told to unplug it at the wall and take the drip stand into the loo. Fine, but that does not stop the bleeping.
For another forty minutes I listened to the bleep and the buzzers buzzing all around before a nurse finally removed the drip, though not before letting me know there were patients with more serious issues than waiting for an IV line to be removed – so that was me told. Well, maybe, it was true, but I’d been coughing constantly for days, was breathless on any exertion, had a high temperature and was exhausted, desperate to sleep. I just wanted it all to stop and told her every minute spent here was making a trip to Switzerland and DIGNITAS more and more appealing. She said it wasn’t a nice thing to say. I wondered if she knew how not nice it felt. She offered me a cup of tea. Said she could probably even find a biscuit.
Early in the morning they moved me into a different room. As I was being pushed along the corridor, sitting on my bed heaped with my belongings, a nursing assistant said she’d managed to find me a breakfast. I told her I loved her. She brought a tray which contained not only breakfast, but a jug of fresh water.
The doctor appeared on the morning round, with the doctor from last night and some students. Said the x ray showed a lung infection (didn’t tell me he’d decided it was community acquired pneumonia – that little nugget came from the DH who was told when he called to find out what was happening) and I’d continue with the IV and oral antibiotics. Said he’d seen my tumour on the X ray (really?) Then followed a squirm-making commentary on how I had to face up to some serious decisions about whether or not I would want to be admitted to an ICU, be put on a ventilator, have ribs broken if I didn’t have a signed DNR … It made me query the seriousness of the infection I have. He assured me it would respond to the treatment – he was talking about the future.
I realised I wasn’t going to get home which meant I was going to have to pull out of the Mining Memories creative writing workshop I was to deliver the next day. I felt so bad at letting people down and so disappointed that the one ‘normal’ working activity since my cancer diagnosis wasn’t going to happen. Spent some time ringing the organiser and my friend, writer Margaret Elphinstone, who I hoped could step in. She did, which was a huge weight off my shoulders. The talk on publishing and marketing has been postponed until April 14, by which time I hope to be able to talk for more than five minutes without coughing.
You, know, I’m not going to give a blow by blow account of the rest of my time in the CAU – one of Dante’s circles of hell. This post could become the length of a novella. I queried the pneumonia diagnosis a few times but, hey, I didn’t do any medical training so what do I know about how long it takes for antibiotics to start to treat an infection. They made not one tiny bit of difference – coughing did not ease, breathlessness increased, for the first time ever my oxygen saturation stats were low and my temperature continued to climb. At least by day two of my incarceration it was taking less than two hours to give me paracetamol to lower my temperature. My CRP (an infection marker or a sign of inflammation) had risen from the 128 which concerned my GP to 200.
I’d fallen out with most of the staff over various issues – like not bringing me something to spit into after using the nebulizer to try to loosen phlegm. Excuse for not providing the container – “Your cough hasn’t been productive.” The timings of the IV antibiotics (I know they weren’t actually doing any good but I harboured a vague hope that if administered as prescribed they might) so one occasion the 4pm dose was going to be at 4.30 but the cannula had ‘tissued’ and had to be removed. The nurse struggled to insert another and after a couple of goes asked a junior doctor who said they’d be along after seeing two patients. It was well over an hour later when the doctor arrived, put in the cannula – but wouldn’t give the antibiotic (nurse’s job) so I waited again. It was finally administered about 7.20pm, over 12 hours after the previous one. I used to think timings of medication mattered, were important. Silly me.
I was suddenly moved to a ward. When a nurse came to give my antibiotic I pointed out it was only three hours since my last dose. They checked and said it showed on the computer it had been raised at 4.20pm – so even though the dose hadn’t been administered then, that’s what showed on the computer.
The consultant who came in the morning (the one who first told me about my tumour back in July) said she doesn’t think its pneumonia and suspects pneumonitis – in which case antibiotics will do nothing as pneumonitis requires steroids. She orders a CT scan, which I have done at 5.30pm. Next morning the scan report proves her suspicions were correct. I started on steroids – temperature subsided immediately and when there were no further spikes I was allowed to come home. I’m still coughing and am very breathless. I hope it improves soon. If I sit very still and quiet and don’t talk, the coughing isn’t so bad. Maybe the universe is simply trying to make me stop talking!
In case you are reading this and thinking, “She’s a right old ‘Moaning Minnie’, full of complaints and criticisms,” I should say they were validated by various members of staff – nurses and doctors – both on the CAU and on the ward.
There is some good news – maybe. Although the CT scan was to see if I did have pneumonitis, it obviously showed up the tumour and there has been some reduction in size. I have an appointment with the oncologist on Monday at which I will learn more about what’s actually happening to the cancer – as opposed to the side effucks from the radiotherapy.
Wednesday, March 03: My appointment with the oncologist was on Monday morning. I felt bad when the receptionist asked if I was coughing or had any other signs of Covid but I wasn’t going to miss the chance of seeing the oncologist so I shook my head.
When I mentioned it to the oncologist, she said they’d do a Covid test just to be sure. I agreed as long as someone carried it out as I know there is no way on earth I could shove an extra-long cotton bud down my throat to meet my tonsils, nor up my nose towards my brain. The specialist nurse said he’d do it. I did wonder if that might be the end of our barely-begun relationship. It was good to meet the person who has so far been a voice on the phone – can’t really say what he looks like because as we (I) were running late this morning, I left the house without my glasses so couldn’t see very much.
My list of questions wasn’t really very long: Is the breathlessness and the cough symptoms of a side effuck such as pneumonitis? If so, what’s the treatment, how long will I have it and what’s the prognosis?
As it was too early to have the scan done, I’d assumed this consultation would be a bit of a formality. Oh, no. The consultant did a thorough examination, including a fair bit of prodding at my neck. My blood pressure was very high and though she did say it was possibly because of seeing her, I should check it over the next few days. Oxygen levels were 100% so then she had me marching me up and down the corridor with her to check the levels of breathlessness and pulse rate.
It was as we were about to go back into the consultation room, she asked me about my friend, Sue – floodgates opened. She was apologetic about the timing of her question but as she said, when I’d stemmed the flow of tears, “There are no words.” Probably the best things she could say.
I explained we were going to meet with a mutual friend, Barb from Arran but currently locked down in Florence, on Zoom that afternoon, so she sent me off to get an X ray done immediately as sometimes there can be a wait and she wanted me to be on time. The specialist nurse did the Covid test (almost painless), and I had an armful of bloods taken.
The oncologist thought she might have felt a swollen lymph node in my neck – but couldn’t say for sure if it was that or if it was inflammation from the radiation. As she doesn’t like not being sure, she has decided bring forward the scan to see what’s going on.
Yesterday, the Covid test came back negative so I asked the specialist nurse what else could be causing the breathlessness and the cough if it’s not Covid and not pneumonitis. Is it, in fact, the tumour tweaking its tail? Is it growing instead of shrinking? Blocking my airways as it did before chemotherapy reduced it? He said there was a possibility of scarring of the lung tissue. That would be permanent. I’d always be breathless.
Today, specialist nurse said the bloods were all good apart from raised C-reactive protein (CRP) and would I mind arranging a urine test. That’s gone off for testing. I do think they should give you the label to attach to the sample container after it has been filled – and dried. Just a thought.
I’m a bit more worried than I was first thing on Monday morning before the consultation. It seems to have been such a medical-focussed couple of days and it seems a lot more things could be not going quite right.
As for the fatigue – “rest, don’t try to do too much” – so the contents of the larder will remain all over the kitchen worktops for now. And she thinks a two-mile walk is a bit ambitious. Better to do shorter walks and not get so tired. Oh, and on top of all that, I’ve been summoned for a mammogram!
Wednesday 10, February: I had my first Covid vaccination on Thursday. If there were any side effects they were camouflaged by the radiation side effects – didn’t even have a sore arm. I don’t know when I’ll receive the second on – maybe in about 12 weeks, depending on supplies.
On Sunday, I managed to stay awake all day for the first time since I finished my treatment and went out for a short walk. We’ve escaped Storm Darcy’s snow but my goodness it was freezing – much too cold to take my gloves off to take photos. In the evening I tried a little glass of wine as the acid reflux has improved with the change of medication. Can’t say I particularly enjoyed it though.
Having been quite chirpy by bedtime on Sunday (it was a tiny glass of wine so it wasn’t that) I was bitterly disappointed on Monday to find I felt worse than ever. The radiation side effects were no worse: in fact, the ‘sunburn’ is now a small patch and the swallowing pain is manageable without pain relief. I do have to remember I can’t eat like I did before. I have to be much daintier. Always a fast gobble of an eater, if take too big a mouthful the pain on swallowing is dreadful so it has to be little bites. I can only say I felt like shit – a feeling which didn’t go away. And, I found I couldn’t sleep at night. Until now, no matter how many naps I took during the day it didn’t stop me sleeping at night. Now, I’m scarcely napping during the day and not sleeping at night.
I think it’s probably ‘scanxiety’ setting in early and to make matters worse it turns out the scan is not going to be six weeks – but 12 weeks after the end of radiotherapy. Last week, blogger Stevie Turner said she’d had to wait three months before her post-treatment scan. I just assumed it was because we had different cancers. Turns out I was wrong.
The specialist cancer nurse called today (and next week’s call is in our diaries). He mentioned I’d see the oncologist at the beginning of March for a six-week post-treatment review and said: “The follow up CT scan will be 12 weeks after the end of your treatment – and then if it’s necessary you may see the doctor.”
To say I was gobsmacked is a gross understatement. I raised my voice, I used the F-word, I cried. He explained the radiation continues working for more than the six weeks I thought, so there was no point in doing a scan until after 12 weeks. OK, I get that, I can understand that (still curious as to how I so thoroughly misunderstood the timings) but what I can’t get my head round is a review when the oncologist can’t know what’s happening to the tumours or the lymph nodes and yet after the CT scan it seems the oncologist might not deem it necessary for us to meet. That surely can’t be right, can it?
I did quite a lot of squawking about how wretched I feel and how I’m worried about my lack of energy and if this is as good as it’s going to get then I wish I hadn’t bothered going for the treatment. I tried to explain how cut adrift it feels – treatment finished, off you go, bye bye. He starts to worry about my mental health and asks if I’d like to talk to someone like my GP. I say I spoke to my GP last week. I don’t say I’ll write my blog tonight and that will sort out the depression – nor do I say, as I wish I had now (and will next week) that by continuing to let me talk – we got onto the subject of chips and mayo at one point – my mood did lift a bit. It’s not always talking about how we feel which helps, it’s feeling connected to another human.
And it’s lifting further tonight – phone conversations with two good friends, a bit of time in the garden breathing fresh air, writing this, realising that if I have until early April before the CT scan, I can be fairly confident no one expects me to kick the bucket in the meantime (they don’t, do they?) so I can look forward to spending time in the garden in March, maybe walking more. And it’s probably not expected I’ll die immediately after the scan so maybe I have some more months, even a year, to be here – just let them not be months of feeling like shit.
Speaking of which, the lactulose helped in the short term but having stopped all pain relief, there’s now no need for the laxatives – yay.
Twelve weeks before finding out what’s going on inside my lung still seems a long, long time to wait.